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Thomas W. LeBlanc is an Associate Professor of Medicine in the Division of Hematologic Malignancies and Cellular Therapy at the Duke University School of Medicine, and a member of the Duke Cancer Institute, Durham, North Carolina, USA. He directs the Cancer Patient Experience Research Program, an initiative to increasingly incorporate patient-reported assessments into the routine care of patients with cancer at Duke Cancer Institute. He is a practising oncologist and palliative-care physician whose research involves the use of patient-reported outcomes to better understand the patient experience of living with cancer, with a focus on the development of interventions that improve upon the status quo. He is an active member of ASCO, the American Society of Hematology, and the American Academy of Hospice and Palliative Medicine.

Amy P. Abernethy is Chief Medical Officer and Chief Scientific Officer at Flatiron Health, New York, New York, USA, a health-care technology company focused on accelerating research and dramatically improving treatment for people with cancer. She is a haematologist, oncologist and palliative-medicine physician, an appointee to the US National Academy of Medicine (formerly the Institute of Medicine) and the National Cancer Policy Forum, a member of the Executive Board for the Personalized Medicine Coalition, and the past President of the American Academy of Hospice and Palliative Medicine. Before joining Flatiron Health, she was Professor of Medicine at the Duke University School of Medicine, and directed the Center for Learning Health Care of the Duke Clinical Research Institute and the Duke Cancer Care Research Program at the Duke Cancer Institute; she remains an adjunct faculty member at Duke University School of Medicine.

Subjects

Abstract

Recording of patient-reported outcomes (PROs) enables direct measurement of the experiences of patients with cancer. In the past decade, the use of PROs has become a prominent topic in health-care innovation; this trend highlights the role of the patient experience as a key measure of health-care quality. Historically, PROs were used solely in the context of research studies, but a growing body of literature supports the feasibility of electronic collection of PROs, yielding reliable data that are sometimes of better quality than clinician-reported data. The incorporation of electronic PRO (ePRO) assessments into standard health-care settings seems to improve the quality of care delivered to patients with cancer. Such efforts, however, have not been widely adopted, owing to the difficulties of integrating PRO-data collection into clinical workflows and electronic medical-record systems. The collection of ePRO data is expected to enhance the quality of care received by patients with cancer; however, for this approach to become routine practice, uniquely trained people, and appropriate policies and analytical solutions need to be implemented. In this Review, we discuss considerations regarding measurements of PROs, implementation challenges, as well as evidence of outcome improvements associated with the use of PROs, focusing on the centrality of PROs as part of 'big-data' initiatives in learning health-care systems.

Key points

The collection of electronic patient-reported outcome (ePRO) data at the point of care is feasible and usually provides more reliable information on the patient's experience than that reported by clinicians

ePRO data are of research quality, and are an important element of learning health-care systems and 'big-data' initiatives

To maximize the utility of big data in learning health-care systems, they must include the 'patient's voice' via the incorporation of PROs into routine care

To date, big-data initiatives have not adequately included ePROs; this situation can be addressed through data standardization

The routine collection of ePRO data simultaneously improves the quality of care for patients and facilitates big-data initiatives

Evidence obtained over the past few years indicates that the routine collection and inclusion of ePRO data in patient care improves clinical outcomes

Basch, E. et al. Development of the National Cancer Institute's patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). J. Natl. Cancer Inst.106, dju244 (2014).

Dueck, A. C. et al. Validity and reliability of the US National Cancer Institute's Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). JAMA Oncol.1, 1051–1059 (2015).

Aaronson, N. K. et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J. Natl Cancer Inst.85, 365–376 (1993).

Flatiron Health, 200 5th Avenue, New York, New York 10010, USA.

Authors

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Contributions

Both authors researched data for the article, discussed the article contents, and wrote, reviewed, and edited the manuscript before submission.

Competing interests

T.W.LB. previously consulted for Flatiron Health, New York, New York, USA, and has served on an advisory board of the Cancer Support Community, Washington, District of Columbia, USA. A.P.A. is an employee of Flatiron Health.